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Journal of Alzheimer’s Disease 51 (2016) 1–9
DOI 10.3233/JAD-150534
IOS Press
1
Ethics Review
Complementary and Alternative Medicine
in the Context of Earlier Diagnoses
of Alzheimer’s Disease: Opening
the Conversation to Prepare Ethical
Responses
Eric Racinea,b,c,∗, Cynthia Forlinid, John Aspleraand Jennifer Chandlere
aInstitut de recherches cliniques de Montr´eal, Neuroethics Research Unit, Montr´eal, QC, Canada
bUniversit´e de Montr´eal, Department of Medicine and Department of Social and Preventive Medicine,
Montr´eal, QC Canada
cMcGill University Department of Neurology and Neurosurgery, Division of Experimental Medicine &
Biomedical Ethics Unit, Montr´eal, QC, Canada
dUniversity of Queensland Centre for Clinical Research, Brisbane, Australia
eFaculty of Law, University of Ottawa, Ottawa, ON, Canada
Handling Editor: Allyson Rosen
Accepted 27 November 2015
Abstract. Preclinical Alzheimer’s disease (AD), a newly proposed, actively researched, and hotly debated research-only
diagnostic category, raises the prospect of an ethical dilemma: whether, and possibly how, to treat a disorder with no target
symptoms. This proposed category rests on the detection of a number of biomarkers thought to provide evidence of AD
pathophysiology years before any behavioral symptoms manifest. Faced with limited treatment options, patients and their
relatives may come to consider complementary and alternative medicine (CAM) a viable option, albeit one with minimal
supporting evidence. Accordingly, the hopes and needs of some preclinical patients and their relatives could further fuel
market-oriented entrepreneurship for CAM. In this ethics review, we provide background and reflect on some ethical questions
related to the roles of key stakeholders arising from the potential for CAM use in the context of a possible preclinical AD
diagnosis.
Keywords: Alzheimer’s disease, bioethics, complementary therapies, health policy
∗Correspondence to: Eric Racine, PhD, Institut de recherches
cliniques de Montr´
eal, Director, Neuroethics Research Unit,
IRCM, 110 avenue des Pins ouest, Montr´
eal, QC, H2W 1R7,
Canada. Tel.:+1 514 987 5723; Fax: +1 514 987 5763; E-mail: eric.
racine@ircm.qc.ca.
Researchers are working to identify patients with
preclinical or asymptomatic Alzheimer’s disease
(AD), an entity defined by evidence of AD pathology
without symptoms or disability [1–5]; however, ethi-
cal issues arise when these patients, lacking effective
and proven treatment, pursue unproven alternatives.
ISSN 1387-2877/16/$35.00 © 2016 – IOS Press and the authors. All rights reserved
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2E. Racine et al. / Alternative Medicine in Early Diagnoses
The goal of researchers exploring this category is
to detect AD long before clinical symptoms man-
ifests, with the aim of someday finding therapies
and intervening at an appropriately early stage. For
now, the label of preclinical AD is recommended for
research purposes only, thus preventing, in princi-
ple, its use in clinical practice [2, 6–8]. However,
not everyone will wait patiently until mainstream,
evidence-based, medicine makes progress toward
either validating this diagnostic category or develop-
ing effective treatment and prevention strategies for
the different stages of AD. Indeed, it is possible that
diagnostic services could be marketed for preclin-
ical AD given the previous approval of diagnostic
imaging for AD despite disagreement within the
clinical community [9]. Additionally, in the absence
of evidence-based treatment, it is possible that the
market for complementary and alternative medicine
(CAM, also called “complementary and integrative
medicine”, “complementary therapies”, and “tradi-
tional medicine” [10]) will grow. This hypothesis is
supported by the millions of individuals who cur-
rently use CAM to prevent memory decline [11–13]
as well as the reported effect of knowledge about
susceptibility on the increased use of CAM [14].
Accordingly, the hopes and needs of some pre-
clinical patients and their relatives may provide
growing momentum for increased market-oriented
CAM entrepreneurship. In this ethics review, we (1)
provide background and reflect on ethical questions
arising from the potential for CAM use in the con-
text of preclinical AD and (2) discuss the roles of
particular stakeholders (i.e., preclinical AD patients;
family and friends; clinicians; AD patient groups;
health agencies and regulators; and the CAM indus-
try) while focusing on the interests and autonomy
of patients. We hope that raising these questions can
help in the preparation of a future ethical response.
DEFINITIONS
Preclinical AD
The concept of preclinical AD remains actively
researched and hotly debated, notably in terms of
how it might differ from measures of susceptibility.
The main difference lies in the proposed certainty
of the measurement. A preclinical diagnosis is con-
ceived of as a more definitive indicator of pathology
as measured by biomarkers (e.g., a positive amy-
loid PET), while measures of susceptibility (e.g.,
APOE genotyping) are thought to only indicate risk;
however, some formulations of this new concept do
acknowledge limitations in the current progression
from pre-clinical AD to full-AD (e.g., lack of com-
plete predictability or deterministic progression) [3].
As research progresses and influences clinical deci-
sions, there is a potential for this diagnosis to cement
clinical and public understandings that a state of pre-
clinical AD does exist—regardless of one’s opinion
about its validity at this time. This possible outcome
highlights and widens existing gaps between rapidly
evolving diagnostic capabilities and rather minimally
effective prevention and treatment options for AD.
For a person receiving such an early diagnosis, this
gap could signal years spent knowing about their
condition with limited evidence-based courses of
action.
Complementary and alternative medicine (CAM)
CAM is often defined by exclusion (i.e., what
is not part of mainstream medicine as taught by
accredited medical schools, notably those of the
Western world) [15]. There exists some credible
scientific investigation of CAM (e.g., the National
Center for Complementary and Integrative Health
(NCCIH) in the U.S.); however, these treatments
remain minimally effective. At this time, CAM
options marketed for different stages of AD include a
variety of products such as dietary supplements (e.g.,
Gingko biloba [16], antioxidants [17, 18], curcumin
[19, 20]); and brain fitness software [21]; and non-
invasive neurostimulation (e.g., transcranial direct
current stimulation) [22, 23]. When CAM is used in
combination with mainstream medicine, it is named
‘complementary’ and when it replaces mainstream
medicine, it becomes an ‘alternative’. Both of these
usages could be fomented by the early marketing of
tests for preclinical AD.
PRECLINICAL ALZHEIMER’S DISEASE
AND COMPLEMENTARY AND
ALTERNATIVE MEDICINE
The market for CAM in both preclinical and clini-
cal AD represents a sizeable opportunity for the CAM
industry. General figures for dietary supplement use
already show that there is considerable interest in
CAM to prevent the effects of cognitive decline,
notably memory [11–13]. From a clinical perspec-
tive, previous research has suggested that knowledge
about AD susceptibility (e.g., through genetic testing)
could lead to significant changes in behavior, includ-
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E. Racine et al. / Alternative Medicine in Early Diagnoses 3
ing adoption or increased use of CAM [14]. These
changes occurred even in a context where research
participants were told that CAM had not been proven
effective [14]. Accordingly, these results could mean
that, regardless of one’s stance on the validity of the
preclinical AD concept, an earlier diagnosis could
encourage CAM use. This type of response—also
seen in other cases where public pressure has gener-
ated some governmental support for non-mainstream
interventions (e.g., liberation therapy and chronic
cerebrospinal venous insufficiency in the case of mul-
tiple sclerosis in Canada [24])—could fuel broader
public support despite any consensus against in the
scientific and medical community.
One reason why people might adopt CAM, despite
knowing that it is not supported by evidence or by
mainstream medicine, could be to try and take more
active control of their health [25]. This rationale
could be reinforced by common notions and narra-
tives about personal autonomy and responsibility for
staving off the effects of aging and illness. The idea of
placing this personal responsibility on patients is in
some ways empowering, since it stresses that a person
can and has the right to choose the health approaches
he or she prefers. However, an ability to choose pre-
supposes that choices will be reasonably informed,
and free of manipulation by companies seeking to
take advantage of these proactive attitudes using mis-
leading traditional or online marketing strategies [26,
27].
With the rise of “health 2.0”, “ehealth” and other
trends which rely on the Internet for health purposes,
broadly construed, the web has become an impor-
tant avenue for the marketing of CAM products. Data
from 2011 about online searches for health informa-
tion indicate that the topic of “memory loss, dementia,
or AD” was searched at least once by 17% of all adult
American internet users, or roughly 24 million adult
Americans (assuming there were 141 million Ameri-
cans using the Internet at the time) [28, 29]. However,
recent research has also found that online informa-
tion and social media content about CAM for AD
is (1) of low quality and (2) rife with serious prob-
lematic practices (e.g., marketing disguised as social
media information; inaccurate claims that dietary
supplements are natural and risk-free) [26, 27]. Given
predictions of a sharp rise in AD among aging pop-
ulations [30], and the possibility of early preclinical
diagnoses, a substantial and expanding market oppor-
tunity for CAM developers and distributors could
develop in the midst of fear, misinformation, and false
hope.
ETHICAL QUESTIONS ABOUT
COMPLEMENTARY AND ALTERNATIVE
MEDICINE IN PRECLINICAL
ALZHEIMER’S DISEASE
The prospect of CAM use resulting from earlier
AD diagnoses raises crucial ethical and regulatory
questions for the different stakeholders involved. In
Table 1, we review some of these questions and
possible responses. These questions also capture
the relationship between each stakeholder and the
patient. However, stakeholders also have complex
relationships among themselves, which we can only
introduce (and not fully discuss) in this short paper.
We hope to stir discussion to help prepare an even-
tual response with the autonomy and best interest of
patients in mind.
Preclinical AD patients
Preclinical AD patients would undoubtedly have to
manage a complex situation over many years. They
would have the opportunity to consider advanced
planning of their personal and medical affairs, thus
increasing their ability to make decisions and choices
based on medical information. At the same time, they
would also very likely display a spectrum of reactions
and coping strategies in response to an early diagnosis
(e.g., changes in lifestyle such as increased exercise
and socialization, earlier end-of-life planning, CAM
use, more extreme or rare actions like pre-emptive
suicide [31, 32]).
Attitudes toward using CAM after an early diagno-
sis could involve the interaction of a host of complex
societal and cultural factors, such as the impact of
diagnosis on the ability to remain in the workforce
and to contribute to the community. For example,
societal messages, which often stress the ‘burden’
of AD, could compound both individual fears of
becoming a burden on future caregivers (e.g., chil-
dren, relatives) [33] and the stigma associated with
the loss of memory and self [34], again fomenting
the pressure for the patient to find alternative treat-
ments. As a result, AD has been described as part of
the feared futures of aging [35]. The fear of being
a burden to one’s relatives has also been explicitly
identified as a motivation to obtain genetic testing
for AD [33]. Patients could be vulnerable to market-
ing campaigns for ineffective CAM based on these
perceptions of being a burden.
All of this could lead patients to wonder whether
they have a moral responsibility to maintain their
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4E. Racine et al. / Alternative Medicine in Early Diagnoses
Table 1
Key stakeholder challenges and questions in the context of complementary and alternative medicine use in preclinical Alzheimer’s disease
Stakeholders General question Specific questions Possible responses to support the
decisions of patients and those
caring for them*
Preclinical AD patients Whether or not to use CAM as
treatment or prevention
Is there an ethical duty to use
CAM to stave off the onset of
one’s AD symptoms such as
memory loss? What are the
consequences of trying or of
not trying all available options,
including CAM? Can a
decision to use CAM be
considered genuinely
informed, and therefore
autonomous? Is there an ethical
duty to avoid CAM use?
Consult and discuss openly with
accredited clinicians about
CAM. Consult available
resources from patients groups.
To help patients make informed
decisions, professional
societies and patient groups
could produce resources (e.g.,
written pamphlets, video
podcasts) to help AD patients
make decisions about CAM use
based on a structured analysis
of the merits and pitfalls of
CAM (e.g., current level of
evidence on CAM, possible
exclusion from clinical trials).
Family and friends Whether and how to support or
discourage a relative’s or a
friend’s use of CAM
Is there a general ethical attitude
(i.e., support or discourage)
that family members should
adopt toward CAM use? Could
family members and caregivers
unduly coerce or incite their
loved ones to use or to abstain
from CAM? Do family
members have an obligation to
support the use of CAM or to
engage with the AD patient
about CAM therapies they
pursue?
Engage in conversation about a
loved one’s desires about
CAM. Seek information from
clinicians and patient groups.
To help relatives engage their
loved one on CAM,
professional societies, health
networks, and patient groups
could produce resources (e.g.,
written pamphlet, video
podcast) to help relatives
engage in conversations about
a loved one’s potential use of
CAM for AD treatment.
Clinicians Whether to recommend, support
or discourage CAM use to
patients and their relatives
What ethical and clinical stance
should clinicians adopt toward
CAM use in preclinical AD?
Should physicians actively
inquire about CAM use by
patients? What advice should
clinicians offer to patients who
have decided to use them?
When should CAM use be
discouraged? When should it
not be challenged?
Inform patients and families
about current level of evidence
for CAM in AD; remind them
about the evidence supporting
the effects of lifestyle
(exercise, diet, cognitive
activity, social networking) on
disease progression.
Prepare more structured
responses through professional
societies and networks (e.g.,
special committees, dedicated
clinical guidelines).
AD patient groups Why and how to provide
preclinical and symptomatic
patients with information about
CAM
Whether they encourage, support,
or discourage their use, how
much and what kind of
information should respectable
patient groups provide? Under
which conditions is
information about CAM
credible?
Continue providing more (and
user-friendly) information
about CAM to patients and
their relatives, and consider
expanding its coverage.
Put in place a procedure to
evaluate information about
CAM, and the clinical and
ethical implications of
providing such information.
(Continued)
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E. Racine et al. / Alternative Medicine in Early Diagnoses 5
Table 1
(Continued)
Stakeholders General question Specific questions Possible responses to support the
decisions of patients and those
caring for them*
Health agencies and
regulators
Whether to change or maintain
the status quo of current CAM
regulation
What ethical obligations exist, if
any, to ensure that CAM
marketing is regulated,
especially in the context of a
lack of evidence? How should
CAM be regulated? Should
there be further regulation of
health claims, monitoring of
use and prevalence, or
consumer warnings?
Update regulations and put in
place processes to evaluate
health-related claims in CAM.
For patients and those caring for
them, there is an opportunity to
augment pressures on
regulators to ensure that strong
policies are in place.
CAM industry Whether to set standards for
CAM production and
marketing or retain status quo
What are the ethical obligations
of the private industry
manufacturing CAM for AD?
What is the scope of the
industry’s responsibility for
marketed products, including
for the documentation of their
efficacy?
Participate and support
independent research on CAM.
Adopt better standards and
processes for accreditation.
∗Responses of the stakeholders concerned, or to support other stakeholder.
health, even if it means employing approaches like
CAM that lack supporting evidence, or whether they
ought to resist the pressures stressing individual
responsibility for one’s “brain health” (e.g., a pos-
sible obligation to avoid wasting family or social
resources) [36–39]. Hence, other stakeholders that
directly support patients (e.g., clinicians, families)
must seek an in-depth understanding of the context
and attitudes of any particular patient. For example,
maintaining one’s health for the sake of one’s fam-
ily might entail different values and ethical principles
than doing so for the sake of oneself.
In spite of the possible downsides of a preclini-
cal diagnosis and the problematic context in which it
could occur, the ability of patients to make healthcare-
related decisions is presumed in liberal democracies.
Therefore, patients could claim the right to pursue
CAM based on their preferences unless they are found
to be incompetent. However, the informed and volun-
tary nature of their choices could be questioned given
current scientific and clinical information available
on CAM. For instance, patients may not know about
the possible opportunity costs of directing hope and
resources in the direction of CAM, which clinicians
should inform patients about (e.g., commitment made
to CAM to the detriment of social activities, exclusion
of CAM users from standard clinical trials) [39]. For
patient groups and professional societies, there could
also be an opportunity to generate guidance docu-
ments and resources (e.g., written or in video format)
that help patients think through the implications of
CAM use based on reputable information (e.g., like
what is done for cancer patients [40]). Otherwise,
there is a risk that poor information will guide patients
and imperil the informed nature of their choices.
Family and friends
Family members will also face a number of difficult
challenges based on their personal attitudes toward
CAM. For example, they might choose to actively
encourage the use of CAM, despite their loved one’s
unwillingness to use them. Their particular relation-
ship to the patient might influence the pressure they
place on their relative, since, as potential future care-
givers, they are also directly impacted by a preclinical
AD diagnosis (e.g., anticipation of the eventual loss
of their loved one as they know them, the responsi-
bilities of caregiving [41], loss of financial stability).
Conversely, family members might choose to voice
dissent against the intent of the patient to use CAM in
the preclinical stages of AD because of their concerns
about the safety and efficacy of these treatments.
Family attitudes, whether supportive or discouraging
of CAM use, could also change depending on the con-
text. For example, the CAM in question could have
significant health risks, or its use could impose finan-
cial burdens that could directly impact the present
wellbeing of other family members. Financial con-
cerns become particularly acute in the context of
a preclinical diagnosis, where CAM consumption
could continue for years before clinical symptoms
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6E. Racine et al. / Alternative Medicine in Early Diagnoses
manifest. As such, this raises the question of what
sort of ethical obligations family and friends might
have in the context of CAM use and preclinical AD.
In the period of time within which the patient is able to
make decisions, must family members support their
loved one’s choices, or do they have a role in decid-
ing which approaches are best for the management
of preclinical AD? To help relatives engage in con-
versations about CAM, specific guidance and support
information (e.g., documents, podcasts) could be gen-
erated by professional societies and health networks
to help understand the choices of their loved one,
and help them make clinically and ethically-sound
decisions (e.g., avoiding risky CAM, avoiding costly
CAM with no benefits).
Clinicians
Evidence-based medicine is a mainstay of clini-
cal care and should, in principle, be the reference
for clinicians and patients about potential treatment
options. However, insufficient evidence is available
to offer a meaningful response to the questions asked
by patients and their relatives about the effectiveness
of the many CAM options geared toward preclinical
AD. Indeed, given the limited number of clinical trials
exploring CAM use in AD, the honest, evidence-
based, response will likely be ‘we don’t know’.
Available clinical guidelines for CAM do help clar-
ify the extremes by suggesting that clinicians: (1)
avoid taking an overly-strong stance against the use of
minimally risky CAM (to respect the patient’s auton-
omy) and (2) discourage the use of risky and/or costly
interventions [42]. In the first instance, clinicians
avoid needlessly alienating the patient and undermin-
ing any sense of hope. They also support the patient
in their self-determined choices. In the second, they
benevolently protect patients from CAM that would
jeopardize their health and wellbeing or exploit their
vulnerability when searching for treatments. How-
ever, between these two rather clear extremes, there
exists ample room to negotiate different opinions and
perspectives on both how to answer questions about
CAM and how to continue to care for preclinical AD
patients who choose to use CAM. Case-by-case eth-
ical reasoning and open-minded communication are
likely key components of an advisable strategy to help
the clinician. These may help him or her feel the way
to appropriate ethical and clinical recommendations
and compromises needed to foster the greatest well-
being of the patient while diminishing preventable
harms.
Clinicians will also need to integrate the complex-
ity of the relationships between family, friends, and
patients into their assessment and management of
preclinical AD in order to best support and inform
each patient within his or her social context (see [39]
for an in depth exploration of the concept of contex-
tualized autonomy [43] in the context of AD). Given
the lack of tailored ethics guidance about the eth-
ical dimensions of CAM use in AD clinical care,
there could be a need for professional societies or net-
works (e.g., through working groups or committees
of societies) to revisit common guidance published
about CAM in order to examine if and how it could
be better tailored to the context of AD. It is also
important to inform (or remind) patients that healthy
habits (diet, exercising, cognitive activity, and social-
izing) have been shown to be beneficial, and patients
who would like more information can be directed to
patient-friendly websites such as those proposed by
trustworthy patient groups [44].
AD patient groups
AD patient groups represent a well-organized force
for providing health information and support. They
are active in AD prevention, earlier detection of AD
symptoms, fundraising, and in providing information
about treatment options and health management. Due
to its diversity and the lack of scientific evidence,
CAM constitutes a thorny area for patient groups,
especially given the active marketing undertaken by
proponents of different CAM options. Current guid-
ance from these groups to patients and members of
the public is consistent with good practices, such
as providing warnings about the lack of scientific
evidence and recommending consultations with a
healthcare professional [45, 46]. However, the need
to provide patients with more comprehensive infor-
mation about the different types of CAM (including
more novel CAM) and their efficacy could lead to a
more substantive role for patient groups in dissem-
inating information. Whereas a health professional
might be perceived as having a conflict with regard
to the kind of information they can and should pro-
vide (e.g., clinicians could fear malpractice if offering
information about CAM; CAM is often perceived
as incompatible with mainstream medicine), patient
groups may be in a better position to inform patients
about, and may possibly have more awareness of, dif-
ferent and upcoming CAM trends based on their vast
networks of patients. This raises questions for them
about the proper ways of reviewing information about
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E. Racine et al. / Alternative Medicine in Early Diagnoses 7
CAM. Patient groups could accordingly create advi-
sory groups or other similarly-minded bodies to help
them decide how and when they should provide infor-
mation about CAM, including the ethics of providing
such information.
Health agencies and regulators
Health agencies and regulators involved in the
approval and monitoring of CAM use in preclinical
AD also face a potential new challenge, since a pop-
ulation could be exposed to exploitative marketing
practices and products over many years. Accord-
ing to many observers and scholars, current North
American CAM regulation is insufficient because of
its discrepant coverage of different types of CAM
and heavy reliance on self-regulation [39, 47, 48].
Specifically, many CAM options, such as dietary sup-
plements, are typically classified as ‘food’ rather than
‘drugs’, which means much less stringent regula-
tions for CAM [47]. Furthermore, each manufacturer
is responsible for complying with FDA regulation,
namely, that the health claims used for market-
ing match available evidence [49]. In the absence
of stricter oversight, self-regulation enables man-
ufacturers to market products without prior FDA
approval. As the range of possible interventions
expands to new types of CAM (e.g., do-it-yourself
brain stimulation for memory enhancement), the
loopholes in current CAM regulation become mani-
fest [23]. Of course, these loopholes are hardly unique
to the context of preclinical AD populations, but there
is a potential for some significant exploitative non-
evidence-based CAM interventions to flourish given
the vulnerability of the preclinical AD population
(e.g., vulnerability created by the lack of available
treatments and the fear of the development of AD).
The amplification of the current situation could be
a wake-up call to examine the need for more sub-
stantive policy and regulation. For patient groups,
clinicians, relatives, and patients, it is an opportu-
nity to pressure regulators to engage with CAM
and ensure that information, products, and services
respect the high standards expected given the circum-
stances in which they are used.
CAM industry
The CAM industry for AD includes a wide range of
manufacturers of dietary supplements, non-invasive
neurostimulation devices, brain training software and
other similar interventions, and lifestyle programs
[39]. However, the safety and efficacy of many prod-
ucts marketed under the umbrella term of “CAM”
are supported by minimal, if any, evidence. Man-
ufacturers should be both encouraged to undertake
or support independent research (e.g., independently
reviewed or commissioned) and obliged to clearly
disclose the level of evidence supporting their claims
about safety and efficacy. Some aspects of CAM reg-
ulation already cover these issues, but are poorly
implemented (see previous section). As indicated
above, untruthful and exaggerated claims are frequent
[26, 27], and health claim regulations can be easily
sidestepped by transforming a direct health claim into
a claim about an effect on bodily structure or func-
tion (e.g., “supporting immune health . .. [instead
of] preventing or curing colds”) [47]. Specific over-
sight of dietary supplements marketed as CAM is
now in place in Canada [50], but this has not pre-
vented some serious issues of mislabeling (e.g., the
substitution of product ingredients for others) [51].
Such gaps point not only to the need for clinicians,
patients, relatives, and patient groups to be aware of
this situation, but also for the manufacturers to claim
responsibility for what they market. Establishing best
practices for the CAM industry (e.g., certification or
accreditation programs for products and services in
collaboration with other groups and societies) could
be a strategy to foster better information about CAM
for patients and their families. Although not limited to
AD, such strategies could also be requested by other
stakeholders (e.g., clinicians, healthcare networks)
before recommending any CAM. Otherwise, clini-
cians remain obligated to disclose gaps in research
and professional standards in order to properly sup-
port the CAM choices of their patients.
CONCLUSION
The current clinical, scientific, and socio-
economic context sets the stage for earlier AD
diagnoses, even years before clinical symptoms man-
ifest. Earlier diagnoses will eventually contribute to a
more complete understanding of AD’s natural evolu-
tion and the development of effective therapeutic and
preventative interventions. However, in the mean-
time, as earlier diagnoses are sought and obtained
in the context of limited evidence-based prevention
and treatment options, preclinical patients and their
relatives may seek alternative ways to delay and treat
symptoms such as CAM. Clinicians and other stake-
holders should recognize the potential for patients to
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8E. Racine et al. / Alternative Medicine in Early Diagnoses
pursue CAM early in the development of preclinical
AD, and should thus prepare meaningful and proac-
tive scientific and ethical responses.
ACKNOWLEDGMENTS
Support for this work comes from a catalyst grant
of the Canadian Institutes of Health Research (CIHR;
Jennifer Chandler, PI; Eric Racine co-PI), the Fonds
de recherche du Qu´
ebec-Sant´
e (Career Award, Eric
Racine) and a scholarship from CIHR (John Aspler).
We extend our thanks to Roxanne Caron for edi-
torial support and to members of the Neuroethics
Research Unit for feedback on a previous version of
this manuscript.
Authors’ disclosures available online (http://www.
j-alz.com/manuscript-disclosures/15-0534r3).
REFERENCES
[1] Dubois B, Feldman HH, Jacova C, Cummings JL, DeKosky
ST, Barberger-Gateau P, Delacourte A, Frisoni G, Fox NC,
Galasko D, Gauthier S, Hampel H, Jicha GA, Meguro K,
O’Brien J, Pasquier F, Robert P, Rossor M, Salloway S,
Sarazin M, De Souza LC, Stern Y, Visser PJ, Scheltens P
(2010) Revising the definition of Alzheimer’s disease: A
new lexicon. Lancet Neurol 9, 1118-1127.
[2] Dubois B, Feldman HH, Jacova C, Dekosky ST, Barberger-
Gateau P, Cummings J, Delacourte A, Galasko D, Gauthier
S, Jicha G, Meguro K, O’Brien J, Pasquier F, Rossor M,
Salloway S, Stern Y, Visser PJ, Scheltens P (2007) Research
criteria for the diagnosis of Alzheimer’s disease: Revising
the NINCDS-ADRDA criteria. Lancet Neurol 6, 734-746.
[3] Sperling RA, Aisen PS, Beckett LA, Bennett DA, Craft
S, Fagan AM, Iwatsubo T, Jack CR Jr, Kaye J, Montine
TJ, Park DC, Reiman EM, Rowe CC, Siemers E, Stern Y,
Yaffe K, Carrillo MC, Thies B, Morrison-Bogorad M, Wag-
ster MV, Phelps CH (2011) Toward defining the preclinical
stages of Alzheimer’s disease: Recommendations from the
National Institute on Aging-Alzheimer’s Association work-
groups on diagnostic guidelines for Alzheimer’s disease.
Alzheimers Dement 7, 280-292.
[4] Mapstone M, Cheema AK, Fiandaca MS, Zhong X, Mhyre
TR, MacArthur LH, Hall WJ, Fisher SG, Peterson DR,
Haley JM, Nazar MD, Rich SA, Berlau DJ, Peltz CB, Tan
MT, Kawas CH, Federoff HJ (2014) Plasma phospholipids
identify antecedent memory impairment in older adults. Nat
Med 20, 415-418.
[5] Abbott A (2014) Biomarkers could predict Alzheimer’s
before it starts, Nature, http://www.nature.com/news/bio
markers-could-predict-alzheimer-s-before-it-starts-1.
14834, Posted 9 March 2014, Accessed June 18, 2015.
[6] Gauthier S, Patterson C, Chertkow H, Gordon M, Herrmann
N, Rockwood K, Rosa-Neto P, Soucy J-P (2012) 4th Cana-
dian consensus conference on the diagnosis and treatment
of dementia. Can J Neurol Sci 39(6 Suppl 5), S1-S8.
[7] Arias JJ, Karlawish J (2014) Confidentiality in preclini-
cal Alzheimer disease studies: When research and medical
records meet. Neurology 82, 725-729.
[8] Karlawish J (2011) Addressing the ethical, policy, and social
challenges of preclinical Alzheimer disease. Neurology 77,
1487-1493.
[9] Weiss R (2004) A tale of politics: PET scans’ change in
medicare coverage, The Washington Post, http://www.
washingtonpost.com/wp-dyn/articles/A30847-2004Oct13.
html, Posted 14 October 2004, Accessed June 18, 2015.
[10] National Center for Complementary and Integrative Health
- NIH, Complementary, Alternative, or Integrative Health:
What’s In a Name? https://nccih.nih.gov/health/integrative-
health, Last updated March 2015, Accessed on September
15, 2015.
[11] Dhikav V, Anand KS (2012) Complementary and alterna-
tive medicine usage among Alzheimer’s disease patients.
Int Psychogeriatr 24, 1361-1362.
[12] Dos Santos-Neto LL, de Vilhena Toledo MA, Medeiros-
Souza P, de Souza GA (2006) The use of herbal medicine
in Alzheimer’s disease-a systematic review. Evid-Based
Compl Alt 3, 441-445.
[13] Howland RH (2011) Alternative drug therapies for demen-
tia. J Psychosoc Nurs 49, 17-20.
[14] Vernarelli JA, Roberts JS, Hiraki S, Chen CA, Cupples LA,
Green RC (2010) Effect of Alzheimer disease genetic risk
disclosure on dietary supplement use. Am J Clin Nutr 91,
1402-1407.
[15] Zollman C, Vickers A (199) What is complementary
medicine? BMJ 319, 693-696.
[16] Schneider LS (2008) Ginkgo biloba extract and preventing
Alzheimer disease. JAMA 300, 2306-2308.
[17] Mecocci P, Polidori MC (2012) Antioxidant clinical tri-
als in mild cognitive impairment and Alzheimer’s disease.
Biochim Biophys Acta 1822, 631-638.
[18] Polidori MC, Nelles G (2014) Antioxidant clinical trials in
mild cognitive impairment and Alzheimer’s disease - chal-
lenges and perspectives. Curr Pharm Des 20, 3083-3092.
[19] Chiappelli F, Navarro AM, Moradi DR, Manfrini E,
Prolo P (2006) Evidence-based research in complemen-
tary and alternative medicine III: Treatment of patients with
Alzheimer’s disease. Evid Based Complement Alternat Med
3, 411-424.
[20] Kelley BJ, Knopman DS (2008) Alternative medicine and
Alzheimer disease. Neurologist 14, 299-306.
[21] George DR, Whitehouse PJ (2011) Marketplace of memory:
What the brain fitness technology industry says about us and
how we can do better. Gerontologist 51, 590-596.
[22] Manenti R, Brambilla M, Petesi M, Ferrari C, Cotelli M
(2013) Enhancing verbal episodic memory in older and
young subjects after non-invasive brain stimulation. Front
Aging Neurosci 5, 49.
[23] Dubljevic V, Saigle V, Racine E (2014) The rising tide of
tDCS in the media and academic literature. Neuron 82, 731-
736.
[24] Pullman D, Zarzeczny A, Picard A (2013) Media, poli-
tics and science policy: MS and evidence from the CCSVI
Trenches. BMC Med Ethic 14,6.
[25] CJF (2014) Older adults’ use of complementary and alterna-
tive medical therapies to resist biomedicalization of aging.
J Aging Stud 28, 1-10.
[26] Robillard JM, Johnson TW, Hennessey C, Beattie BL, Illes
J (2013) Aging 2.0: Health information about dementia on
Twitter. PLoS One 8, e69861.
[27] Palmour N, Vanderbyl BL, Zimmerman E, Gauthier S,
Racine E (2013) Alzheimer’s disease dietary supplements
in websites. HEC Forum 25, 361-382.
AUTHOR COPY
E. Racine et al. / Alternative Medicine in Early Diagnoses 9
[28] Fox S (2006) Online health search 2006, Pew Internet &
American Life Project, http://www.pewinternet.[org/2006/
10/29/online-health-search-2006/, Posted 29 October 2006,
Accessed September 15, 2015.
[29] Fox S (2011) Health Topics, Pew Internet & American
Life Project, http://www.pewinternet.org/2011/02/01/health-
topics-2/, Posted 11 February 2011, Accessed September
15, 2015.
[30] Beddington J, Cooper CL, Field J, Goswami U, Huppert FA,
Jenkins R, Jones HS, Kirkwood TB, Sahakian BJ, Thomas
SM (2008) The mental wealth of nations. Nature 455, 1057-
1060.
[31] Holroyd S, Snustad DG, Chalifoux ZL (1996) Attitudes of
older adults’ on being told the diagnosis of Alzheimer’s
disease. J Am Geriatr Soc 44, 400-403.
[32] Davis DS (2014) Alzheimer disease and pre-emptive sui-
cide. J Med Ethics 40, 543-549.
[33] Gooding HC, Linnenbringer EL, Burack J, Roberts JS,
Green RC, Biesecker BB (2006) Genetic susceptibility test-
ing for Alzheimer disease: Motivation to obtain information
and control as precursors to coping with increased risk.
Patient Educ Couns 64, 259-267.
[34] Piver LC, Nubukpo P, Faure A, Dumoitier N, Couratier P,
Clement J-P (2012) Describing perceived stigma against
Alzheimer’s disease in a general population in France: The
STIG-MA survey. Int J Geriatr Psychiatry 28, 933-938.
[35] Williams SJ, Higgs P, Katz S (2012) Neuroculture, active
ageing and the ‘older brain’: Problems, promises and
prospects. Sociol Health Ill 34, 64-78.
[36] Ortega F (2009) The cerebral subject and the challenge of
neurodiversity. Biosocieties 4, 425-445.
[37] Pitts-Taylor V (2010) The plastic brain: Neoliberalism and
the neuronal self. Health (London) 14, 635-652.
[38] Whitehouse PJ (2012) A clinical neuroscientist looks neu-
roskeptically at neuroethics in the neuroworld. In: The
Neuroscientific Turn: Transidisciplinarity in the Age of the
Brain, Johnson JM and Littlefield MM, eds. University of
Michigan Press, Ann Arbor, pp. 199-215.
[39] Racine E, Aspler J, Forlini C, Chandler J (2016) Broadening
the lenses on complementary and alternative medicines in
preclinical Alzheimer’s disease: Tensions between auton-
omy and contextual determinants of choice. Kennedy Inst
Ethics J, in press.
[40] National Cancer Institute - NIH, Thinking about com-
plementary and alternative medicine, http://www.cancer.
gov/publications/patient-education/thinking-about-cam,
Last updated April 2015, Accessed on September 15, 2015.
[41] Frank JB (2008) Evidence for grief as the major barrier
faced by Alzheimer caregivers: A qualitative analysis. Am
J Alzheimers Dis Other Demen 22, 516-527.
[42] Eisenberg DM (1997) Advising patients who seek alterna-
tive medical therapies. Ann Intern Med 127, 61-69.
[43] Racine E, Dubljevic V (2016) Porous or contextualized
autonomy? Knowledge can empower autonomous moral
agents. Am J Bioeth 16(2), 48-50.
[44] Alzheimer’s Association, Brain Health, http://www.alz.org/
we can help brain health maintain your brain.asp,
Accessed on September 15, 2015.
[45] Alzheimer Society Canada, Complementary and
alternative health care, http://www.alzheimer.ca/en/ About-
dementia/Treatment-options/Complementary-and-alterna
tive-health-care, Last updated 4 November 2014, Accessed
on September 15, 2015.
[46] Alzheimer’s Association, Alternative Treatment, http://alz.
org/alzheimers disease alternative treatments.asp,
Accessed on September 15, 2015.
[47] Ventola CL (2010) Current issues regarding complementary
and alternative medicine (CAM) in the United States: Part 2:
Regulatory and safety concerns and proposed governmental
policy changes with respect to dietary supplements. Pharm
Therap 35, 514-522.
[48] Smith A, Jogalekar S, Gibson A (2014) Regulation of natu-
ral health products in Canada. J Ethnopharmacol 158(Part
B), 507-510.
[49] U.S. Food and Drugs Administration, Q&A on dietary
supplements, http://www.fda.gov/food/dietarysupplements/
qadietarysupplements/, Last updated 28 April 2015,
Accessed on June 18, 2015.
[50] Health Canada, About natural health product regulation in
Canada, http://www.hc-sc.gc.ca/dhp-mps/prodnatur/about-
apropos/index-eng.php, Last updated 28 December 2012,
Accessed on June 18, 2015.
[51] Newmaster SG, Grguric M, Shanmughanandhan D, Rama-
lingam S, Ragupathy S (2013) DNA barcoding detects
contamination and substitution in North American herbal
products. BMC Med 11, 222-235.
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